The Basics

My husband, Nestor and I live in NYC. I have been married for 5 years. We have a 20 month old girl, Amelia and my husband has an 18 year old son, Spike (a nickname). They are both amazing kids and we are so lucky to have them.

Amelia was born full term. Normal pregnancy, but I had an excessive amount of amniotic fluid. We suspected something amiss. At birth, I noticed she didn't cry when she came out and when they handed her to me -- she was going thru the motions but no sound came out, also she had no rooting reflex. Very scary.

Because of the amniotic fluid situation I knew she was going to be taken for some tests before they let her feed. That turned into 2 1/2 months in the NICU. Amelia had a g-tube placed at 1 month old. Developed severe reflux, so they did a fundoplication, pilora plasti, hiatel hernia repair and internal replacement of the g-tube at 2 months old.

She is hypotonic, with tracheomalasia and has a working diagnosis of Bulbar Palsy, which by definition is a degenerative disease associated with ALS.Which means she has a very weak swallow and no suck, therefore, she is g-tube fed, but the frequent suctioning of her nose and mouth has thankfully fallen away and it's been almost 3 weeks since we've had to do any of that ..Amelia is progressing wonderfully and the diagnosis, in her case, was really just a way of describing her weaknesses -- but as we all know, docs love labels if they can find one. They believe a schematic episode happened in utero. We've had every test, scan, MRI, EEG, EKG, etc. done and everything has always come back normal.

She is really thriving these days. Colds always give us a panic and slight set back, but she is the hardest working baby I know. With therapy up the wazoo (PT 4x30, OT 3x30, SLP 3x60, Special Instruction 4x60) she is making huge strides. We recently got a stander for her and it has made a world of difference in her strength -- really learning to bear weight into those tree trunks of hers! We had a swallow study done in June of 07 and although she is still micro aspirating on honey thickened liquids there were no signs of nasal regurgitation! YAY!...she hasn't had aspiration pnuemonia in over a year, so the recommendation has been to give her therapeutic feeds using .5MLS of purees (we use stage 2 baby foods and I sometimes make my own) and she has shown wonderful progress here too. Trying to coordinate breathing and swallowing is very hard for her.

She is moving like crazy. Reaching and grabbing at everything. When put in the right position, she'll push up onto all fours and she's letting us know her likes and dislikes, without question. She tells us how she feels all the time -- but we're still waiting for our magic names to be spoken from that precious little mouth. but we'll take the smiles, laughs and high fives until then.